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About angieInCA

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    So. California
  1. angieInCA

    Fibromyalgia Anyone?

    Oh My Gosh, I also have tingling in my lips and tip of my tongue, also the tip of my tongue is now numb.. My tongue also swells and becomes rippled around the edges. (yes, I have been tested for many allergies). The swelling and rippeling usually happens with an anxiety attach and can last for several days. You are so far the only other person I have seen say they have the tingling mouth problem. To answer other questions, yes, I have had my Vitamin D and B12 & B6 levels checked. All were low and I was diagnosed with pernicious amemia. I take B12 shots every 2 weeks and it in now in check. I also take 5000mg of D and also make sure I get 20 min of sun on my face and chest every day. I have removed dariy, soy, corn, HFCS, MSG, and several other things from my diet. I basically eat fresh fruit, vegetables and meat that I cook. I try to keep meals very simple. I also have added unfiltered apple cider vinegar (2 teaspoons a day) and raw unfiltered honey and cinnamon to my daily diet and I also drink cucumber and mint water every day. I have seen a great improvement in some digestive issues that had developed. Thanks every one for the conversation and replies. Angie
  2. angieInCA

    Fibromyalgia Anyone?

    Thanks for the responses. Gemini, I have been gluten free with a clean diet and a gluten free kitchen (the whole family went gluten free in the house when I was diagnosed) since 2008, so it has been 5 years. I am very careful and I rarely get accidently glutened, but it does happen sometimes. That is one of the reasons the Doctors are surprised I was having increasing problems because they recommend going gluten free and I already am there. Actually Fibromyalgia is not considered an autoimmune disorder. The new research dictates that it is considered a neurological disorder where the regulatory cells in the palms of your hands malfunction causing the brain to start misfiring information to the nerves. here is a link to an article explaining it better. http://communities.washingtontimes.com/neighborhood/steps-authentic-happiness-positive-psychology/2013/dec/29/fibromyalgia-solved-pathology-not-mind/ The type of doctor you have to see with Fibro is a Rheumatologist because that is where it was first diagnosed when they found arthritis was not the culprit. It is no longer considered a throw away diagnosis that they give when they don't know what is wrong. My Rheumatologist has actually been great and when he diagnosed me he said "I am so sorry to tell you that you have Fibromyalgia because there is no cure but we can halt the progression and provide some relief with the right combination of treatment." I forgot to mention in my last post that along with the medication, I have been in physical therapy since September. I go 2 times a week and it has been a God send for relief. I get a 30 min. massage and 90 min. monitored exercise working on areas most affected. The more research I do I believe it has more to do with hormomes and I believe I need to work with a Endocrinologist. I have thought for years that my thyroid is not functioning properly even though all of my tests keep coming back normal. After reading the article that PricklyPear1971 posted above I believe I need to find a Neuroendocrinologist. Thank you for posting that article Pricklypear1971.
  3. Hi all, Over the last few years I've been having some deep muscle pain and tingling in my hands and feet. Around August of last year I started developing insomnia, debilitating exhaustion, agonizing nerve pain all over but especially in my hands and feet, an inability to regulate body temp and extreme myalgia pain all over my body to the point of having to use a cane to walk. I have also experienced brain fog, memory loss and sensory sensitivity to light, smells, noise and touch..... you name it, it creates pain for me. In May, after seeing 6 different doctors, I was diagnosed with Fibromyalgia. I now have to take 4 different medications daily to try to get the nerve misfiring under control and to help me get some sleep. I also take pain meds every 6 hours and I have a stronger pain med for really bad days. In the last 2 months I have had to go to the hospital 3 times for morphine shots when the pain has become unbearable. I had to quit my job because I could no longer perform. My question is, do any of you have Fibromyalgia or CFS? Were you diagnosed before or after celiac disease or gluten sensitivity? All of my Dr.'s were surprised to learn I have Celiac disease and don't seem to think there is a connection. I was wondering what your experience might be if you have both and if you have any pearls of wisdom. Thanks Angie
  4. My sister and nephew were recently diagnosed with Fabry Disease. They were both tested for celiac some time ago and the results were negative but they were eating gluten light at the time. I will be tested for Fabry disease on Monday. My sister and nephew has the same intestinal issues as a celiac and feel better when they are gluten free. We believe they are gluten intollerent and maybe have Celiac Disease. My real question is has anybody seen or read about or have Fabry Disease in conjunction with Celiac Disease? We have been researching but haven't found anything that really relates the two. Any info would be appreciated.
  5. angieInCA

    Gluten Free/ Friendly In Las Vegas!

    I have to go to Las Vegas quite frequently for business (about 4 times a year). I have stayed at several different hotels from the main strip to the old strip. I have never had a bad experience. All of the resturants are pretty well versed in food "allergies" and gluten free. I find reaturants to be a bit easier than buffets. Don't hesitate to ask if they have Gluten free and egg free options. All resturants that I have eaten at that did not have a gluten free menu or options were more than willing to ask the chef to make anything I want to order. Examples: at small cafe in Flamingo made me a naked (sans bun)surloin burger with mushrooms and cheese with tomato, lettuce and onions on side (like a salad) and any sauce or dressing I wanted on the side at no extra charge. Mexican resturant at New York, New York double checked everything and helped me walk through the menu for tacos and enchiladas. Italian resturant at Rio made me a gluten-free eggplant "parmigana" made with rice and potato flour. Best meal I ever had in Vegas was at Emeril's at MGM. Chef came to our table of 14 and took my order personally, ribeye, garlic potatoes and seasoned steamed veggies and then made me a special dessert of a gluten-free brownie and lavender ice cream (to die for}. For gluten-free in Vegas it's easy, just speak up. They are very well versed in helping all types of diet issues. BTW, I'm going to LV May 18-21 for the Hospitality Design Show.
  6. angieInCA

    New And Unsure

    Wow! I love your analogy! May I have your permission to use this in the future?
  7. angieInCA

    Suddenly It Makes Sense

    A positive DH diagnosis is a Positive Celiac Diagnosis...period.... My blood tests came back very weak positive after being gluten-free for 6 weeks and my GI said it was possible I was just intollerent and we scheduled a endoscopy for a month later in which he wanted me to start eating large amounts of gluten for the test. The very next week I saw the dermatologist and got a DH diagnosis. Called the Gi and he said, "Well there you have it. You have celiac disease. No need for the endoscopy, we will cancel the test." "Now just follow the diet, it's a lifelong commitment".
  8. angieInCA

    Gluten Free Beer!

    I was not a big beer drinker before except for an occasional Guinness or one of the Sam Adams brews. I Like Redbridge!!! I never liked waterd down lite beers, I always liked beers that had full flavor so for me it's good
  9. I too was never hungry, would have to remind myself to eat. I was not anemic and regular blood testing showed nothing irregular. Yet nothing explained the terrible pain I was experiencing (constant migraines, debilitating back, leg and arm pain). Since diagnosis and more indepth testing it's been uncovered that I have Pernicious anemia and totally void of Vit D. I did know I have reactive hypoglycemia and hypokalemia which in themselves should have triggered something in the Dr's heads. When I first went gluten-free I suddenly experienced hunger like never before. It calmed down after about 6 weeks of a strict gluten-free diet. And I basically stopped all grains (which meant all the baked goodies) for about 3 months then started reintroducing them. I don't drink soda (never did) except ocassionally. My addiction is pure clean cold water! AND HOT COFFEE (black)!!!!!! I kept a food diary for 2 years and my regular Dr would just shake her head and at one point told me I was lying to myself and not writing down the truth of what I ate. I fired her and found a new Doc
  10. I was one of those that had normal weight for most of my life until about 6 years ago. Suddenly i started putting on unexplained weight. The Dr's just said I was over 40 and it was to be expected. I lived on a diet. For over a year I lived on 1200 calories a day and gained 20 lbs. All told by the time I was diagnosed I was 50 lbs overweight. My GI said that weight gain during undiagnoses is very common. He believes the body is in constant starvation mode and the metabolizm shuts down and the body clings to every calorie consumed. Since going gluten-free I have yoyoed with 20 lbs. I think my metabolizm is trying to wake up. I'm stabalized and not yoyoing anymore so hopefully I can start to see some weight loss. I still need to lose about 40 lbs.
  11. angieInCA

    Immune System Excessive Cold/flu Killer?

    I was the person who had a cold every 6 to 8 weeks. I caught everything coming and going. I would get a sinus infection 2 to 3 times a year and it would develope into bronchitis. I had the flu at least once if not twice a year. I've been gluten-free for just over a year and I don't remember the last time I was sick. I haven't taken an antibiotic in over 10 months. I may feel like I'm catching something for a day or two but I always seem to rally without actually geting sick.
  12. angieInCA

    Not Just What You Eat But Where

    My work is geting ready for their Holiday Feast that they have catered for our whole company (70 employees). The office manager came to me on Thursday and asked me to help with the Menu so she could make sure there were pleanty of Gluten free options. She had already contacted the caterer and they assured her they would be very careful and make sure the gluten-free foods were truly gluten-free and they would set up the food so that the gluten-free foods had their own table to help avoid cross contamination throught serving utinsils. The only food that will have gluten is the stuffing and most desserts. They said all gravies and sauces will be thickened with corn starch. I offered to bring in a Gluten free cake and pumpkin muffins. I just started working there in August and since I have been there 3 other employees have come and told me that they are gluten free due to health issues. They had never said anything to the bosses before but since i have made it known about my Celiac they felt free to let their conditions known. The result has been that the owners of the company has decided to redo our kitchen/break room with a new counter and small fridge, toaster oven and microwave all to be designated Gluten Free
  13. angieInCA

    Not Just What You Eat But Where

    It helps that his son is Austic and Gluten free, he really understands the need to keep my work area clean. People walk around the office eating gluten stuff all the time and he tells them to keeep it away from my area.
  14. angieInCA

    Not Just What You Eat But Where

    I had my keyboard and mouse replaced with new at work and NO ONE is allowed to touch it by orders of my boss
  15. OMG! That is exactly what I said to my Dr when he first threw out the possible IBS diagnosis to me before testing. He said' "It's probably just a case of IBS". I said, "Doesn't that mean I'm Basically Stumped and just want to write a perscription?" and "Isn't IBS really just a symptom of something else really going on?" He then said "I guess we could test for celiac disease". Duh! you think!!!!!!